Getting Ready For 2nd AVR - 29 Years Old

[pellicle]

...
While discussing the valve and anti-coagulation, he was quite excited about the upcoming trials for mechanical heart valve patients using anti-coagulants that don't require INR monitoring. The drugs are targeting Factor Xa (pronounced "Ten"a). I could't speak to how it works, and I haven't had much time to research it, but he said the trial paperwork has already come across his desk.

I would say to read those outcomes carefully and comb through the reports with a criticial eye and your (what are they hiding in there) glasses on

but yes, I agree with your view.

 

[Astro]

Thank you John and everyone else who has replied, for sharing your journey and decision making process. These discussions have helped me settle on a mechanical valve for my surgery (December). My surgeon said that he would have a mechanical valve at my age. However, through the conversation he kept saying, "If you decided on a tissue valve, I recommend using ...(brand name)... valve". This double talk can be confusing even when you are already quite solid in your decision.

Maybe/maybe not a warfarin alternative that doesn't require testing will be proved safe. This forum gives me confidence that I'll cope with warfarin with its INR testing so I won't be stressing about when/if such an alternative will be developed.

 

[John-3919]

sounds like we're going to be having the exact same surgery a little more than a month apart. Good luck!

Best of luck to you as well! Outcomes for Bentall are extremely encouraging. From what I've read, no statistical difference in mortality or morbidity vs. only a valve replacement - which is to say it should go very well!

I’m having TAVR in two days, here in Atlanta.

Thank you, Ladybug! Best of luck with your procedure. I agree, it's a good time to be alive!

Best Wishes on a unremarkable recovery

Fingers crossed. That's all I'm hoping for currently.

Bidin' My Time - from the Gershwin

I had no idea where the expression had come from, but I won't complain about my evening taking a detour to enjoy some Gershwin!

This forum gives me confidence...

I couldn't agree more. There's a time and a place for anecdotal evidence, and this forum and it's members provide invaluable first hand experiences to people like us facing a difficult (and personal) decision regarding valve selection and quality of life concerns. I know I will be forever grateful!

 

[DachsieMom]

You will be fine. I had the bentall four years ago at age 41. I have a st Jude valve mechanical graft conduit. No issues and just one warfarin a day. I am also a runner, although have no time to run much anymore. Definitely sign up for cardiac rehab and do home testing when allowed (typically at 3 months post op).

 

[vitdoc]

Dear John,

I have gone through somewhat similar experiences also. Born with bicuspid valve, replaced with tissue valve age 29 in 1977. Early on with tissue experience. Failed replaced 1983 St. Jude. Good until 2006. 6.5 cm aneurysm found and aortic repair with another St. Jude. 3rd degree heart block needed pacer. 2007-2010 three stenting procedures to open saphenous vein to right coronary extension required for aortic surgery in 2006. 2016 mitral clips for decompensated mitral insufficiency.
Now getting reading to go on a thirty mile bike ride. Ride around 100 miles per week. Also did significant skiing for 30 years all on warfarin. Only bleed once into my leg after a bike accident one week before I was to climb Mt Ventoux
in France. Only got up part way due to the leg. My point is simply that valve surgery even with warfarin should not be limiting. Good luck with your surgery.

 

[user 16827]

Dear John,

I have gone through somewhat similar experiences also. Born with bicuspid valve, replaced with tissue valve age 29 in 1977. Early on with tissue experience. Failed replaced 1983 St. Jude. Good until 2006. 6.5 cm aneurysm found and aortic repair with another St. Jude. 3rd degree heart block needed pacer. 2007-2010 three stenting procedures to open saphenous vein to right coronary extension required for aortic surgery in 2006. 2016 mitral clips for decompensated mitral insufficiency.
Now getting reading to go on a thirty mile bike ride. Ride around 100 miles per week. Also did significant skiing for 30 years all on warfarin. Only bleed once into my leg after a bike accident one week before I was to climb Mt Ventoux
in France. Only got up part way due to the leg. My point is simply that valve surgery even with warfarin should not be limiting. Good luck with your surgery.

Ventoux is a beast

 

[user 16827]

Personally, for the time being, I'm much more comfortable sticking with Warfarin and home monitoring. I'll let someone else be the guinea pig.

Warfarin has proven history, it's not an exact science by a long shot but it is easy to live with and monitor.
After the first few months the INR usually settles down and you learn to adapt and grow comfortable
with weekly testing.

There are plenty of us active types on this forum so you can carry on doing activities on ACT

Best of luck with it all, enjoy the journey

 

[John-3919]

Dear John,

I have gone through somewhat similar experiences also. Born with bicuspid valve, replaced with tissue valve age 29 in 1977. Early on with tissue experience. Failed replaced 1983 St. Jude. Good until 2006. 6.5 cm aneurysm found and aortic repair with another St. Jude. 3rd degree heart block needed pacer. 2007-2010 three stenting procedures to open saphenous vein to right coronary extension required for aortic surgery in 2006. 2016 mitral clips for decompensated mitral insufficiency.
Now getting reading to go on a thirty mile bike ride. Ride around 100 miles per week. Also did significant skiing for 30 years all on warfarin. Only bleed once into my leg after a bike accident one week before I was to climb Mt Ventoux
in France. Only got up part way due to the leg. My point is simply that valve surgery even with warfarin should not be limiting. Good luck with your surgery.

That’s certainly encouraging! I can’t wait to get back on my feet and active again.

 

[Mbk22]

Hello All,

I just wanted to create a post to put myself out there on the forum to share my experience, and express my appreciation for all those active members who have helped others with their perspectives, stories, and information.

A bit about me: I had an Aortic Valve repair for a unicuspid aortic aortic valve with severe regurgitation at Cleveland Clinic in 2014 at the age of 24. They did the best they could, but ultimately the repair didn't take fully and the valve returned to a moderate/severe regurgitation. I avoided re-operation for a few years, but at my yearly post-echo checkup with my cardiologist he recommended that I get re-operated on in the next 3-6 months. I went for a second opinion at Northwestern Memorial and they agreed that I needed to replace the valve.

Immediately after the news I began researching which valve replacement option was best (tissue vs. mechanical). I certainly was biased toward wanting a tissue valve with the notion of getting TAVR as a follow up to its inevitable degeneration. The Doctor at Northwestern explained a few things that made this idea clear that it wasn't a good one. First, a tissue valve in a person of my age would very likely fail in under 10 years. At which point they would put in a TAVR valve which also doesn't have a proven long term life, so with each subsequent valve degeneration they would have to put in progressively smaller TAVR valves creating a Russian nesting doll type scenario, all the while shrinking the passage through the aortic valve smaller and smaller. Until ultimately, they would have to go in with another open heart procedure and pull that whole mess out and replace the valve again. (He had clearly explained this situation to a lot of people who thought it was a viable solution for younger patients). Clearly, in my situation, that was far from an ideal treatment plan. He said the best choice was a mechanical valve. I was apprehensive about a mechanical valve given everything I had heard about anti-coagulants, but I've since come to realize that my concerns with ACT appear largely unfounded.

After finding this forum and hearing the first hand experiences of people living with mechanical valves, and how little anti-coagulation drugs effect their day to day lives has really brought me around to getting a mechanical valve. Also, seeing members who have lived with mechanical valves for over 50 years (the cardiologist at Northwestern mentioned that he had multiple patients with 50+ year mechanical valves as well) has been truly inspiring, and has given me the perspective that this is truly the best way forward. I was a big runner in the last few years before I started experiencing various symptoms in the last few months which caused me to stop, but I'm extremely excited to get back to running and exercising - and living a normal life again!

I still have a few tests to go through, and have yet to finalize my meeting with the surgeon, but it's looking like early to mid September will be my operation date (fingers crossed).

Thank you to everyone involved with the forum. It has really given me solace that I'm making a good choice for me, and that I have lots to look forward to!


Best,


John

John

 

[Mbk22]

Hello All,

I just wanted to create a post to put myself out there on the forum to share my experience, and express my appreciation for all those active members who have helped others with their perspectives, stories, and information.

A bit about me: I had an Aortic Valve repair for a unicuspid aortic aortic valve with severe regurgitation at Cleveland Clinic in 2014 at the age of 24. They did the best they could, but ultimately the repair didn't take fully and the valve returned to a moderate/severe regurgitation. I avoided re-operation for a few years, but at my yearly post-echo checkup with my cardiologist he recommended that I get re-operated on in the next 3-6 months. I went for a second opinion at Northwestern Memorial and they agreed that I needed to replace the valve.

Immediately after the news I began researching which valve replacement option was best (tissue vs. mechanical). I certainly was biased toward wanting a tissue valve with the notion of getting TAVR as a follow up to its inevitable degeneration. The Doctor at Northwestern explained a few things that made this idea clear that it wasn't a good one. First, a tissue valve in a person of my age would very likely fail in under 10 years. At which point they would put in a TAVR valve which also doesn't have a proven long term life, so with each subsequent valve degeneration they would have to put in progressively smaller TAVR valves creating a Russian nesting doll type scenario, all the while shrinking the passage through the aortic valve smaller and smaller. Until ultimately, they would have to go in with another open heart procedure and pull that whole mess out and replace the valve again. (He had clearly explained this situation to a lot of people who thought it was a viable solution for younger patients). Clearly, in my situation, that was far from an ideal treatment plan. He said the best choice was a mechanical valve. I was apprehensive about a mechanical valve given everything I had heard about anti-coagulants, but I've since come to realize that my concerns with ACT appear largely unfounded.

After finding this forum and hearing the first hand experiences of people living with mechanical valves, and how little anti-coagulation drugs effect their day to day lives has really brought me around to getting a mechanical valve. Also, seeing members who have lived with mechanical valves for over 50 years (the cardiologist at Northwestern mentioned that he had multiple patients with 50+ year mechanical valves as well) has been truly inspiring, and has given me the perspective that this is truly the best way forward. I was a big runner in the last few years before I started experiencing various symptoms in the last few months which caused me to stop, but I'm extremely excited to get back to running and exercising - and living a normal life again!

I still have a few tests to go through, and have yet to finalize my meeting with the surgeon, but it's looking like early to mid September will be my operation date (fingers crossed).

Thank you to everyone involved with the forum. It has really given me solace that I'm making a good choice for me, and that I have lots to look forward to!


Best,


John

John
I will give some very real time feedback from yesterday’s procedure. I’m a chicago guy and my son is 23 years old. He has his aortic valve replaced when he was 18 at Boston Childrens with a tissue valve. The valve calcified in 4 years which was probably 1 to 5 years less than anticipated. I did extensive research with my chief surgeon and friend at Boston childrens. We were unhappy with results but my son is active , doesn’t want Coumadin , and we all know keeping open heart surgeries in limitations over his lifetime is best. The conventional option is onyx valve and Coumadin in young patients and hopefully see you in 40 years. It’s a good solution.
But TAVR VIV ( valve in valve ) is definitely here and the data on TAVR in native valves is over 10 years old. Yes almost all the data was around 60 to 85 year patients in the over 20,000 procedures in the USA because that’s where the market is in replacement valves and what was limited to high risk , then medium risk patients. Is approved for low risk patients like you less data is out there. Buts it’s about your anatomy and not age that really makes the choice and duration. Obviously low risk patients work great but how long versus a mechanical? So we went to the top 3 , dr Martin Leon at nyc pres Columbia , Cleveland clinic and mt Sinai. These guys all have over 3000 procedures and on the Sapien 3 test as well as starting the tests in 2005.
Fast forward, Dr Leon and team did jacks VIV in the cath lab yesterday. Installed a 29mm valve in place of his 25 mm old valve which was awesome!
Jack was up in 4 hours walking and if echo looks good today he is checking out in 3 hours. We opted to stay off the surgery table and kick the can down the road another 5 to 10 years hopefully without anticoagulants. I invest and follow the research. I think the Gortex material could be the game changer in the next valves as its in testing and the smart money says it’s going to replace bovine and last a long time. But not sure. So in the end , it’s no surgery , and buy time , or mechanical , Coumadin and hopefully be done. I will warn you that the team is key on VIV and happy to discuss.
A 29 mm with allow another VIV and still be 27mm afterwards. Probably two more VIV actually.
Most don’t have the facts in my research. You have to invest a lot of time to get the facts. Cardiologists have limited time.
Good luck on your decision.

 

[Mbk22]

John
I will give some very real time feedback from yesterday’s procedure. I’m a chicago guy and my son is 23 years old. He has his aortic valve replaced when he was 18 at Boston Childrens with a tissue valve. The valve calcified in 4 years which was probably 1 to 5 years less than anticipated. I did extensive research with my chief surgeon and friend at Boston childrens. We were unhappy with results but my son is active , doesn’t want Coumadin , and we all know keeping open heart surgeries in limitations over his lifetime is best. The conventional option is onyx valve and Coumadin in young patients and hopefully see you in 40 years. It’s a good solution.
But TAVR VIV ( valve in valve ) is definitely here and the data on TAVR in native valves is over 10 years old. Yes almost all the data was around 60 to 85 year patients in the over 20,000 procedures in the USA because that’s where the market is in replacement valves and what was limited to high risk , then medium risk patients. Is approved for low risk patients like you less data is out there. Buts it’s about your anatomy and not age that really makes the choice and duration. Obviously low risk patients work great but how long versus a mechanical? So we went to the top 3 , dr Martin Leon at nyc pres Columbia , Cleveland clinic and mt Sinai. These guys all have over 3000 procedures and on the Sapien 3 test as well as starting the tests in 2005.
Fast forward, Dr Leon and team did jacks VIV in the cath lab yesterday. Installed a 29mm valve in place of his 25 mm old valve which was awesome!
Jack was up in 4 hours walking and if echo looks good today he is checking out in 3 hours. We opted to stay off the surgery table and kick the can down the road another 5 to 10 years hopefully without anticoagulants. I invest and follow the research. I think the Gortex material could be the game changer in the next valves as its in testing and the smart money says it’s going to replace bovine and last a long time. But not sure. So in the end , it’s no surgery , and buy time , or mechanical , Coumadin and hopefully be done. I will warn you that the team is key on VIV and happy to discuss.
A 29 mm with allow another VIV and still be 27mm afterwards. Probably two more VIV actually.
Most don’t have the facts in my research. You have to invest a lot of time to get the facts. Cardiologists have limited time.
Good luck on your decision.

 

[John-3919]

John
I will give some very real time feedback from yesterday’s procedure. I’m a chicago guy and my son is 23 years old. He has his aortic valve replaced when he was 18 at Boston Childrens with a tissue valve. The valve calcified in 4 years which was probably 1 to 5 years less than anticipated. I did extensive research with my chief surgeon and friend at Boston childrens. We were unhappy with results but my son is active , doesn’t want Coumadin , and we all know keeping open heart surgeries in limitations over his lifetime is best. The conventional option is onyx valve and Coumadin in young patients and hopefully see you in 40 years. It’s a good solution.
But TAVR VIV ( valve in valve ) is definitely here and the data on TAVR in native valves is over 10 years old. Yes almost all the data was around 60 to 85 year patients in the over 20,000 procedures in the USA because that’s where the market is in replacement valves and what was limited to high risk , then medium risk patients. Is approved for low risk patients like you less data is out there. Buts it’s about your anatomy and not age that really makes the choice and duration. Obviously low risk patients work great but how long versus a mechanical? So we went to the top 3 , dr Martin Leon at nyc pres Columbia , Cleveland clinic and mt Sinai. These guys all have over 3000 procedures and on the Sapien 3 test as well as starting the tests in 2005.
Fast forward, Dr Leon and team did jacks VIV in the cath lab yesterday. Installed a 29mm valve in place of his 25 mm old valve which was awesome!
Jack was up in 4 hours walking and if echo looks good today he is checking out in 3 hours. We opted to stay off the surgery table and kick the can down the road another 5 to 10 years hopefully without anticoagulants. I invest and follow the research. I think the Gortex material could be the game changer in the next valves as its in testing and the smart money says it’s going to replace bovine and last a long time. But not sure. So in the end , it’s no surgery , and buy time , or mechanical , Coumadin and hopefully be done. I will warn you that the team is key on VIV and happy to discuss.
A 29 mm with allow another VIV and still be 27mm afterwards. Probably two more VIV actually.
Most don’t have the facts in my research. You have to invest a lot of time to get the facts. Cardiologists have limited time.
Good luck on your decision.

I’m happy to hear your sons procedure was a success!

Unfortunately, the tavr option really came off the table when the size of my aneurysm became known. They’re cracking my chest regardless of valve choice to replace my aorta, so given my circumstances I’m okay with the mechanical valve my team and I have decided on.

Thank you for sharing your story, and best of luck to your son! He should have a good long while before he has to worry about his valve again.

 

[MMReese]

Glad to hear all is well with your son. I had my aortic replaced when I was 13 years old with a mechanical valve and take daily coumadin. It's now going on 38 years and I'm getting it replaced in the next 6-8 weeks, due to scar tissue build up. I could go longer with it, but my Mitral has calcified and needs to be replaced, so they are going to update the aortic too. Coumadin never changed my lifestyle or stopped me from doing what I wanted. I was also told at 13 yrs old, I should not carry children. Well, I went full term with my daughter and had her naturally. She is now a healthy 27 year old nurse. To this day, I'm still very happy that I selected the mechanical valve at a young age.

 

[nobog]

Fast forward, Dr Leon and team did jacks VIV in the cath lab yesterday. Installed a 29mm valve in place of his 25 mm old valve which was awesome!
Jack was up in 4 hours walking and if echo looks good today he is checking out in 3 hours. We opted to stay off the surgery table and kick the can down the road another 5 to 10 years hopefully without anticoagulants. I invest and follow the research. I think the Gortex material could be the game changer in the next valves as its in testing and the smart money says it’s going to replace bovine and last a long time. But not sure. So in the end , it’s no surgery , and buy time , or mechanical , Coumadin and hopefully be done. I will warn you that the team is key on VIV and happy to discuss.
A 29 mm with allow another VIV and still be 27mm afterwards. Probably two more VIV actually.
Most don’t have the facts in my research. You have to invest a lot of time to get the facts. Cardiologists have limited time.
Good luck on your decision.

Keep in mind when they tell you that they implanted a 25mm they are referring to tissue annulus (TA) diameter - not inside diameter. A 25mm TA valve will most likely leave about a 21-22mm inside diameter. Then they put a 29mm inside that which refers to parent diameter - that's about the valve outside diameter at rest (not implanted). So.... 29 minus 22 = 7, which sounds like the high end of compression but it is better to have a bit more than less as they don't want the TAVI to move. If this is they case, and I have made a number of assumptions here, then there will be little room for another TAVI. I would ask to find out the effective orifice area (EOA) which is measured cm2.

 

[carolinemc]

Met with my surgeon at Northwestern and officially got my surgery date: November 8th.

After looking at my MRI it appears I have an aneurysm at my aortic root, and mild dilation of my ascending aorta.

The surgeon is going to do a Bentall procedure (valve, root, and ascending aorta replacement). He's planning to use the On-x with Vascutek graft.

He said that while my ascending aorta isn't at the size to require intervention, he is going to replace it anyways to hopefully avoid another surgery down the road - which I'm absolutely fine with.

While discussing the valve and anti-coagulation, he was quite excited about the upcoming trials for mechanical heart valve patients using anti-coagulants that don't require INR monitoring. The drugs are targeting Factor Xa (pronounced "Ten"a). I could't speak to how it works, and I haven't had much time to research it, but he said the trial paperwork has already come across his desk.

Personally, for the time being, I'm much more comfortable sticking with Warfarin and home monitoring. I'll let someone else be the guinea pig.


Now I just have to bide my time for the next two months waiting for surgery!

Congrats on getting Surgery date and information on what they will do. Preparation helps when knowing what is in store. Good luck and keep us informed.

 

[John-3919]

Tomorrow is the big day! I'm certainly nervous to go in, but excited to finally be post-op.

I will give a post-surgery status update whenever I'm able.

Thanks again everybody for your input and support so far!